Thursday, May 23, 2013

My youngest child, Ella, turned a year old in April. It was a bit of a sad day for me, because traditionally when our kids turn 1, they get to eat a piece of birthday cake all by themselves. Strangely, Ella wasn't eating any pureed foods or solids, and never put anything in her mouth. She was also very tiny.

Very.

Her 1 year checkup was a bit of a shock. I knew Ella was small for her age, and was only nursing, which was unusual, but when the doctor told me that we might need to hospitalize her to get her more nourishment, I couldn't help but cry.

At her previous checkup, the doctor had strongly encouraged me to "make" her begin eating. In spite of my best efforts (trying several times a day), she still refused to eat anything. If I pried her mouth open (she didn't open willingly. Ever.) and forced food in her mouth, she would begin to gag uncontrollably until eventually she'd vomit up the contents of her stomach, causing her to lose what little nourishment she had gotten down.

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Now, since Ella was born, she's had the worst case of eczema/rash/dermatitis/cradlecap/oozing, etc. I've ever seen. The doctor's answer was to give her hydrocortisone cream on affected areas (basically everywhere) several times a day for a week, and then give her a week off, and then repeat.

Every time I tried that route the rash would come back worse, and often in the rare place that hadn't been rashy before.

I've always suspected allergies or something in my breast milk was causing her problems, but the doctor assured me that nothing harmful comes through the breast milk and that babies didn't have allergies. He did recommend that I see a dermatologist if I was concerned. Since I figured that the dermatologist was going to say the same thing, I didn't see the point (I later did go, and was right; he basically told me that "you just need to put hydrocortisone on several times a day for a week every other week until she's three.")

So anyway, after her 1 year checkup, I felt a need to start putting things in motion myself. I scheduled an appointment with the pediatric allergist and also made an appointment with a pediatrician.

The pediatrician was fabulous. He listened so well, and best yet, he'd seen cases like Ella's, and did agree that it seemed to him as if she was having an inflammatory reaction to something.

The allergist was also really great. He and I compiled a list of foods that I eat that might be causing Ella to react badly, and she had blood taken to test. Unfortunately, we couldn't test as much as we'd like because they can only take so much blood from a baby. We tested her for oats, rice, soy, eggs, dairy, wheat, and dust mites. She was highly allergic to all of them, and mildly allergic to rice and dust mites. (I suspect she's also allergic to nuts, but as I said, we could only test a few things).

I can't tell you how vindicated that made me feel. Having all along suspected allergies, I'd 3 weeks previously begun avoiding glutens, dairy, starches, and sugars. This had drastically helped Ella's condition but she was still having breakouts. Knowing what other foods to avoid answered a lot of questions.

It also explained why Ella wasn't interested in eating food, only liquids. As the pediatrician said, "if her insides were as inflamed as her outsides, it would be far too painful to swallow anything other than liquid."

We still have a lot of things that need to be answered, and decisions to make regarding future appointments, therapy for eating, crawling, walking, talking, etc, but at least we finally have some results and hope that she might begin to improve.

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comments:

Love her little smile! It was so good to see her bright-eyed last night and with some energy, and playing the drums! And EATING! Your sacrifices on her behalf are beautiful and admirable, and I pray she continues to make progress. (((Hugs))) and praying for you both!

This post breaks my heart for you... both for Ella's health challenges and for you dealing with it all... Still praying for you all. So many of your challenges are so very similar to what we have been through with Lilli and with how I recently felt before being diagnosed with eosinophilic esophagitis. I had been to the point where I couldn't get any solid food down... it was painful and scary. I'm praying that as you continue to proceed that things really improve and you see improvement in her health. Love to you all.